Should you tell someone about his or her Alzheimer's diagnosis?

In a recent posting, the question was asked about whether or not to tell someone with Alzheimer's disease about his or her diagnosis. This is a complex question and one that may surface for many families.

While most would not raise such a question about a diagnosis such as cancer, the diagnosis of Alzheimer's disease seems to highlight a greater feeling of uncertainty in the context of offering what feels 'right' or is in the best interest of a loved one with this disease.

Brian D. Carpenter, Ph.D., an assistant professor of psychology in Arts & Sciences at Washington University in St. Louis, stated that arguments in favor of telling the person he or she has Alzheimer's disease are generally based on a respect for patient autonomy and the value of truth telling felt by families or in professional relationships. He goes on to say that thoughts against disclosure often reference the lack of useful treatments and the uncertainty of diagnosis and prognosis, and escalating feelings of hopelessness.

A recent article in the "Journal of the American Geriatrics Society" reported "disclosure of a dementia diagnosis does not prompt a catastrophic emotional reaction in most people, even those who are only mildly impaired, and may provide some relief once an explanation for symptoms is known and a treatment plan is developed."

I feel that most Alzheimer's patients should be told of their diagnosis, but the timing of the discussion, the extent of details, and the way it occurs are key to a reasonable outcome. What you choose to say or not say depends on the degree to which the person is troubled by or aware of their symptoms.

For instance, if the person is frustrated and says he can't do things he once could, or wonders what's wrong, it's only fair to offer an honest explanation. If these experiences are not acknowledged, persons are left feeling frightened, alone, crazy.

Once told of their diagnosis, some persons may deny having Alzheimer's, but they may acknowledge memory loss. If this is the case, then it makes sense to communicate using those words. Others may deny having any problems at all which is a natural defense mechanism for dealing with a devastating diagnosis, or it may be a symptom of the disease.

Most individuals with a dementia lose insight into their own deficits, or they simply forget that they are forgetful. Be sensitive to the person's reaction. It's probably best to allow the person's reactions to set the tone for further communication about their diagnosis.

If your loved one accepts their diagnosis, provide reassurance that you'll provide ongoing help and support. Remain open to their need to talk about the disease. Be aware of nonverbal signs of sadness, anger or anxiety, and respond with love and reassurance as best you can.

Overall, there is no clear right or wrong answer as to when, how, or whether to tell a loved one about an Alzheimer's diagnosis. I do feel, however, that every individual has a 'right to know'. Yet the delivery of the message can vary widely. The families I have met approach this issue differently, yet, in a way that makes sense for them and the person that they know best and love deeply.

63 Comments Posted

My husband feels he has Alzheimer's he want to see my doctor but don't have health insurance yet he's waiting for it to kick in soon

Joyce bawary

April 29, 2015 8:51 p.m.

I was told that doctor's are obligated to tell other providers about this diagnosis. I was a psych nurse many years before I was diagnosed with Alzheimer's. I feel that telling other providers is a violation of confidentiality unless the client gives written permission to let others know of the diagnosis I would like an explanation as to why. I did not see the posting of on the site

Lisa houllahan

March 28, 2015 2:50 a.m.

My siblings and I are currently struggling with the question of whether we should inform our 90 year old father that he has been diagnosed with early stage Alzheimer's disease. So it has been interesting reading all the comments. What I have concluded is that there is no answer that applies to everyone and that the decision should be based on a number of factors.
There are good arguments on both sides and the results of telling a love one that he/she has Alzheimer's have ranged from good to devastating. It seems to me that if and how someone is told should be based on a number of factors such as timing and the progression of the disease but most importantly - the personality of the person. Some will take the diagnosis well and might even be relieved to know what is happening to them while others will react with anxiety and depression further reducing their quality of life.
In our case my father is a very emotional man who become easily depressed and actually suffers from pelvic pain which is triggered by stress. My mother is now bed ridden with late stage Alzheimer's and my father is emotionally drained watching my mother's health slowly dwindle to a shadow of her former self.
Some will say that he has the right to know but in this situation, I'm afraid the truth will cause him pain, anxiety and adversely affect the quality of his life as well as his longevity. I pride myself on being honest but as painful as it is to me, I have learned that sometimes truth is not the best answer.

Guy Rondeau

January 22, 2015 8:37 p.m.

My husband was diagnosed with vascular dementia several years ago. He doesn't remember it, and I don't remind him. I do my best to agree with what he wants as long as it doesn't hurt him or anyone else. Most of the time, I mimic his symptoms and he thinks we're just both getting old and senile together. Our friends have been told and asked to be patient with his frequent strange behavior and to please not get insulted when he is rude and odd. They are wonderful and forgiving, helpful, true friends. If you can't beat 'em, join 'em.

Liz

August 26, 2014 7:52 p.m.

My mom was this past year diagnosed with early onset dementia but recently we've all started to notice more extreme mood swings and more pronounced short term memory loss. My dad went into the hospital briefly this past week to have a heart catheterization procedure and this kicked off some serious bouts of confusion, paranoia and anger. My mom would NEVER let us cuss and now she cusses like the proverbial sailor. It seems to happen more often at night time and especially while dad was away from home. I'm thinking it's possible that dad has been keeping the worst of it to himself and we're afraid he is taking verbal abuse from her that we haven't been told. We're trying now to convince him to go into assisted living with her. I have one brother that lives close to them but has a full house already with his kids and grandkids. Has anyone else had to convince someone to, in their own best interests, go into assisted care? We're also trying to decide whether or not to tell my mom about her diagnosis. I'm torn about it. I think she deserves to know but it seems almost cruel to have to tell her every time she forgets.

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June 6, 2014 5:18 p.m.

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Alvin

May 25, 2014 1:54 p.m.

my mother is convinced that there is nothing wrong with her, i would be grateful for some information to deal with this.

carol hollister

May 15, 2014 7:49 p.m.

I am a caregiver for an Alzheimer's friend. I disagree with the "truth telling" about their disease. If I were told this devasting "truth" the depression would be intolerable. Further, ten minutes after experiencing horrible emotions due to being "told" the Alzheimer's patient does not remember. My friend just lost her sister from Alzheimer's at age 60 (my friend also has Alzheimer's at age 62). She was in so much agony when told of her sister's death, then the next day had absolutely no memory of it. Further, she was taken to CA for spreading of ashes at sea which was equally traumatic, now does not remember even taking the trip. She continues to talk about going to see her sister and is so worried about her. She has been told several times with the same outcome then no memory at all. It is just to hard to watch this suffering.

NR

September 26, 2013 9:44 p.m.

My mom quit eating and lost 50 pounds, we had noticed memory issues before this but thought getting old . After weight lost we got concerned but stepdad would not allow help cos of their drinking. He died and she is in memory care but still sharper than others and we haven't told her it is permanent!Most days she thinks she is in a little apt so do we just let her be unhappy or tell her? she had 2 beautiful homes &amp; only remembers one.

Lis

July 1, 2013 3:40 p.m.

My mom is going thru all the test for Alzheimer`s. But she does not believe she forgets anything. She is very defiant, cusses at us and would rather a stranger take care of her. This is not the mom that I remember. All we want to do is help her. She does not take a bath forgets to take her medicine. And if you question her about it she gets very irate. The Dr. has already told us she cannot be left alone. As my mother has been living by herself for the past 2 years since her husband has died. She says she will kill herself if she ever had to go to a nursing home. Is this normal? I am the only one that lives close enough to look after my mom, but I do work so it is very difficult sometimes. I know that she is not capable of living by herself, she gets paranoid and is delusional. She makes up stories that are not true. How do we get thru to her. I am feeling hopeless.

Eleanor

June 25, 2013 10:00 p.m.

How do you get someone to go to the doctor when they refuse to go? We talk things over with my Mom and she will agree to go, then when it's time she refuses and becomes very agitated. How can we coax her out when she's so afraid?

Beth

April 22, 2013 12:35 p.m.

After having an argument with my mother in law who has been diagnosed with alzheimers the reason the doctor said she was not allowed to drive, taking the keys from her when she couldn't even back the car out and hearing her cuss and accuse me of gas lighting her to make her crazy, I have decided that it is best to lie and make it out that her diabetes is the reason why she has memory problems, driving restrictions, etc., it is counterproductive to some people who have depressive and anxiety issues to begin with to tell them of such a diagnosis when they will forget it anyway. Some people just can't handle the truth, probably already know it anyway, they just want to exist in a reality that is most comfortable to them.

Marilee

January 28, 2013 12:37 a.m.

In my mom's case, telling her the diagnosis would be very detrimental to her. We have yet to have a Dr. diagnose her with Alzheimer's, but she has had neuropsych testing done every 2 years since 2002. She was diagnosed with Mild Cognitive impairment about 8 years ago, and was quite depressed after that diagnosis. Each round of testing brings anxiety, which I realized when I accompnied her to the testing. Mom has always prided herself on her intelligence, and she feels that her memory loss means she is stupid. I try to assure her that her memory loss does not mean she is stupid. In fact, she still can do crossword puzzles and play Scrabble (and win against people who don't have dementia). I think the important thing is to be &quot;in the moment&quot; with the person who has Alzheimer's, to care for and love them. I am fortunate that mom wrote her Living Will long ago, and appointed me Power of Attorney. If you are worried about your loved one driving, please take action. My mom totaled her car in an accident that, thankfully, no one was hurt in. Also (for Tony), the Alzheimer's Association has given me tremendous advice and support! I moved my mom close to me 2 years ago when the nurse at her Assisted Living said that mom needed more help and support. I'm thankful she let me know, mom is much safer now.

Meg

January 25, 2013 6:48 a.m.

God this is so difficult, my dad has recently been diagnosed as having Dementia with Lewy bodies. He's 80yrs old and lives 6,000 miles away from me. Recently been to see him and am planing to go back in April this year. Still coming to terms with this and not sure what to expect when I return to see him. How does does cope?

Tony

June 23, 2012 8:04 p.m.

This is for Clair: Your husband may not be able to finish a book and that is okay. I find that simple puzzles may work (even children's puzzles) Does he like music? Music videos playing on the VCR or CD player are something he may enjoy.
I know my husband likes the music channel on our t.v. which plays the big band era music and he will watch it for hours.
I keep books with a lot of pictures near him.

Virginia

May 17, 2012 3:09 p.m.

Given the symptoms you've described about your 79 year old dad the pastor, it sounds dangerous for him to drive. He can see a general practitioner ( regular doctor)...you can talk to the doctor's staff beforehand about your concerns about driving and other issues. The doctor may suggest to your dad that he stop driving. In some state, you can contact the Dept of Motor Vehicles and have them require a drivers license test. This can remain anonymous to your father. It sounds like some of the church board members or elders need to help relieve him of most of his responsibilities, kindly.

Beth

May 3, 2012 10:32 a.m.

if i were to be told i had altheimers it would make me worse. I know it. It did my Mother.

Glenda

January 19, 2012 10:29 p.m.

My Dad is going on 79. He is a retired Pastor and used to being in the position of leading others and/or in control. His memory has gotten so bad, can no longer handle a check book, has outbursts from out of nowhere, forgets he is suppose to be at a location to perform a wedding or a funeral; has tried to cash a check stub, just recently had an appointment to take my mom's car to the dealership for some work done and ended driving the wrong car all the way down there and had to be told by the people at the dealership that he brought the wrong car. He has begun to have frequent loss of bowels, will stare into a kitchen cupboard for minutes until you get his attention and remind him he must be looking for something? Loses &quot;important&quot; things, poor recall, has entire phone conversations thinking he is talking to someone else on the other end of the phone. This is scary! He is a hazard behind the wheel of a car. My mom says he would not be happy with anyone suggesting he may have a &quot;form of dementia&quot;. I'm saying it has gone on too long. Something has to happen quick before something very bad happens. I don't know what &quot;kind&quot; of doctor to try and get him to go to? Help?

Tonya

October 22, 2011 2:34 p.m.

My husband was diagnosed a year ago. After the diagnosis he definitely developed an obsession with his fate. Not a day goes by that he doesn't reference it. I definitely feel he should have been told it was a neurological disorder; but a slow developing one. I think this would have had a positive effect on his day to day quality of life now. He is on anti-depressants and anti-anxiety medication, but I feel his quality of life has been detrimentally affected by knowing his diagnosis. He knows there is no hope.

susan

June 19, 2011 5:56 p.m.

My brother who is 79 yrs.old has had dementia(alzheimer's) for the past6 yrs. His wife recently told us (my sister &amp; 2 of his children) that she told him that his brain is shutting down &amp; then his other organs will stop &amp; then he will die. When we went to see him, he hugged his son &amp; cried &amp; cried &amp; told him that he was dying. I think it's WRONG that she told him such a thing. She is not the mother of his children as their mother died many yrs. ago. She now keeps all of us from seeing him unless she is there to hear every word we &amp; he says to us. She has put him in a nursing home yet goes &amp; takes him out every day &amp; keeps him gone till around 10 pm so all he's doing is sleeping there. We are so worried about the way she treats him but don't know what we can do about it. Any one know what we can do?

Sally

April 5, 2011 9:17 p.m.

My father is sick with Alzheimer's I am his full time Caregiver. My Dad has been sick now for 1 1/2 years approx., he had shown sign's of memory impairment for 2 or 3 years previously now that we look back as a family. I also take care of my mom who has a lot of health issues. My Dad can't remember anything short term but he does remember that he goes to school &quot;adult daycare&quot; on Tuesday's and Friday's. He also remembers all his family's names which surprises me.
Because what he is now forgetting is how to eat properly he combines foods or drinks that shouldn't be combined, or how to wash himself in the shower or how to brush his teeth or shave. He doesn't know when to turn the water down when it gets to hot as he washes his hands&quot; I regulate his water for him and do more and more for him when he is taking a shower. He is incontinent and has bad balance. When we watch TV Dad hallucinates often so we try to be very careful what we watch.
Dad likes putting together children s puzzles and He likes to watch old reruns of Bonanza too. I feel bad when he is watching TV but it gives me a break. He takes Namenda &quot;which doesn't seem to help&quot;. I am just worried that I could be doing more for him.
Thanks to listening

Ann

January 8, 2011 3:22 p.m.

Our mother, was recently told by the geriatric doctor that she has Alzheimer's Disease (AD). The doctor informed my sister that mom was told she has AD and the doctor is aware that mom didn't absorb what she was told. It is now up to my two sisters and myself to tell her. She knows something is going on and is mad at my one sister, who has nothing but good intentions for mom. I have read the comments in this forum and found it very helpful. I will use some of the advise to help us to prepare for our conversation with our mom. Thanks.

Jane

December 9, 2010 7:41 a.m.

My siblings and I had a &quot;conference&quot; call last night about my Mom's report of dementia - probably AD. She is and always has been a very proud private individual which is making our responsibilities to her difficult. We believe she is very much aware of what may be happening (3 of her siblings have been afflicted). She will need to be told because otherwise she is in physical danger, of this we are certain. We are trying to be as empathetic and respectful and loving as we can &quot;putting ourselves in her shoes&quot;. What we think we will be doing is having her doctor explain the report in order for us to get a &quot;foot in the door&quot;. Then take it from there and reassure her she has all of our support and love. We want to give her a options (1-2) on how we can work with this so she is participating in her care. Our greatest fear is that she is going to &quot;shut-down&quot; and get depressed and withdraw to where we can't reach her and consequently she will go &quot;downhill&quot; faster than need be. The situation is complicated further in that over the last 5-6 months she has experienced some &quot;physical&quot; issues which has frustrated and depressed her already. I am planning to travel to her and take her for this &quot;revealing&quot; appointment then stay with her for a couple days. If anyone has any advice or suggestions to help us make this a smoother transition rather than adding more harm it would be appreciated. I have read previous

Linda

October 21, 2010 1:09 p.m.

My brother and I have not been able to discuss my mother's dementia with her, or even delicately bring up the subject of memory loss without her flying into a screaming, hysterical tantrum. She throws objects, beats her fists against walls, screams obscenities and accusations, and calls us names. How do you tell someone who behaves this way about something they cannot hear? This behavior is dramatically and disturbingly different from the gentle, soft-spoken mother who raised us. It is very frustrating, because we would like to be honest with her, but no amount of reason seems to get through to her. In her mind, it seems there is no question of anything being wrong with her-- any suggestion that she may have memory, disorientation, or behavioral issues is purely conspiratorial.

Bea

September 23, 2010 3:10 p.m.

I have been diagnosed with Alzheimer's and am not too surprised since it is prevalent in my family. My husband is very supportive and will help me. I feel bad for him and for our children because Alz. is a horrible disease and so hard on the spouse and children. I feel that the most important thing is to tell each of them how much they mean to you and to hug them as often as possible. Pray for a cure to be found.

Beth

July 2, 2010 10:23 a.m.

My wife, who is 80 years old, displays many of the symptoms associated with alzheimer's. Her doctor initially called her condition &quot;something more than age related dementia&quot; but now sees it as alzheimer's. One of her more obvious poblems aside from memory loss is balance, but I don't see this mentioned in discussions of AD. Why? She's at the stage when we're considering getting her a &quot;walker&quot;.

Richard

November 16, 2009 8:12 p.m.

I didn't realize I had already posted a comment!! I'd just like to add something pertaining to the comments from people who claim it is hurtful to tell someone he or she has dementia. I would still always say the person MUST be told; however, if telling does seem to cause undue pain or stress, well, don't bring it up again!!! Most people are more resilient than we realize and can handle the truth.

Carol

October 6, 2009 9:08 p.m.

I talked about it with my husband from day one He knows he has a problem and I told him I would do anything in my pouwer to help.I let him do more or les what ever he wants
I asked him to be more active, and he is He walks drie four times a week about 4-miles he gose to the gym two times a week and we bowl two times a week.he dos clean up jobs around the house ( somtimes thrie days in the row the same thing) but so wat?
I kiss hug ans love him as much as posible,sure I get frustraited some times but I tell my self it could be wors,and yes I know it will get wors, but for now we take what we have and make the best of it. O yes we also jointa AH resurge groep It worked for us
Paula

Paula

October 6, 2009 7:06 p.m.

The telling of the ALZ diagnosis to my spouse and myself, regarding her case, was a horrid mistake. So foolish and harmful, and hurtful and pointless was it, that I cannot picture the setting wherein it would be, or could be, beneficial and helpful. I could not help but think then, five years ago, what I believe with a certainty now: The Medical Profession Has Not a Clue as to the Right and Wrong of how to act with the ALZ patient. Shame, shame, shame on them. Sorry. but shame on them. We are into this very Strange World all alone, with virtually no intelligent help from the medical professionals. Telling the Stricken One the probable diagnosis is, from my experience, an insane, senseless, and cruel exercise.
Don't Do It. And. Stop Doing It.
I am aware that the weight of the garden variety arguments runs counter my objections. Such, however, does not by that alone win the debate. george

George

July 10, 2009 9:48 p.m.

My mother has just been diagnosed with
Alzheimer's dementia. With regard to driving, should we stop her or wait until she is stopped (by some mishap)?

shakurah

May 18, 2009 2:04 a.m.

I would appreciate your advice... My husband's dad and one aunt and uncle were all diagnosed with AD (his aunt with early onset AD). His dad is in the final stages, and his aunt and uncle have died. I am concerned because my husband's personality seems to be changing in the same ways that his father's did long before the onset of the &quot;usual&quot; symptoms of AD. Has anyone else noticed signs like these: becoming more extroverted and uninhibited (having to talk to everyone he sees at church, feeling like he should still volunteer for the high school football concession stand even though our youngest graduated 3 years ago), using poorer judgment in social situations (talking in church, not realizing that others might overhear his remarks about them, talking too much, taking way too long to get to the point), having trouble reading a map (used to be second nature for him; he's a civil engineer), can't remember how to use a debit card (he asks me)? Could these be early AD symptoms even though they're not the top 10 warning signs? I hate to worry him if they are nothing to worry about.

Marilyn

May 15, 2009 9:31 p.m.

I think that most people who do not tell a loved one about the diagnosis of dementia do this because THEY cannot deal with the diagnosis. A person diagnosed with dementia ABSOLUTELY has the right to know - not only so he or she can get legal affairs in order (in our case my mother's legal affairs had already been dealt with prior to my dad's death), but so he or she understands what is happening - as much as possible.
My POA sister said we absolutely could not tell Mother about her diagnosis. Sister threatened legal action if I said anything so out of fear (she's a very good lawyer), I said &quot;memory disease&quot; rather than Alzheimer's. If I had to do it over, I WOULD have been totally honest. Even so, when my mother worried she was &quot;off her head,&quot; it really helped her to know she had a DISEASE and wasn't simply going crazy.

Carol Hillman

May 12, 2009 8:39 p.m.

Today was very disturbing to our family. My mother (78) had a small lunch bag packed with her nightgown, remote control and a book, which she explained her mother (deceased) was calling to come get her to go on an outing. I asked her about it and she went on to explain she went to some kind of flag ceremony and then had lunch with people that were in need of assistance. She takes medicine for her under active thyroid, however she gave my father a hard time about taking her medicine. I'm not sure she took it and dad is at his wits end with her (worrying). I made an appointment to see her doctor and read articles about it, so now we have to see if it is actually a problem with this awful disease, or not. My mother came from a family of eight children and all but two have had the disease, three are deceased and the other two are afflicted with it. The articles I have read online have been extremely helpful.

Jo

May 5, 2009 7:40 p.m.

Thanks to everyone for their comments. I am off to my parents to help them get organized to move closer to us &quot;kids&quot; Luckily they are financially very secure but my Dad who is 82 healthy and sharp as whip is struggling with my Mom's (77) memory loss. I am worried about what it will be like as I have not seen them since Thanksgiving. They have had a 53 year love affair so this is very very tough. Dad realizes he needs to be closer to us and give up his vacation retirement home they have enjoyed for 15 years. All the comments are so helpful thank-you every one, especially Claire who seems just like my Dad. My Mom is going to the Dr and is about to lose her license. She knows something is wrong but is not sure what - she is not officially diagnosed but she has all the signs. She thinks the Dr. is against her - she knows all of us by name but forgets that my sister moved across the country to my city last year and things like that. My parents have a cruise planned and I am worried that my Dad will go to the bathroom in the airport or something and my Mom will wander off and forget where he is. I will talking to him about all this when I am there and I know he is looking forward to the support. I was thinking they should both get medic alert bracelets that way Mom won't feel singled out and she would have identification at all times. What do other people do about this issue?
thanks

Tracey

February 2, 2009 5:17 p.m.

My grandmother was initially diagnosed with mild cognitive dementia and then two years later with Alzheimers. It has been a very difficult process. She (and several other family members) knew something was very wrong early on. She saw a neurologist and went through diagnostic testing. The early diagnosis gave her time to get her personal, legal, and medical affairs in order. Many family members are still in denial about her condition, which has made things very difficult for her. It's been difficult placing her in a memory care facility when other family members tell her that she's just fine and they don't understand why she can't be at home. It would be cruel to withhold information about a person's medical condition unless they were advanced enough that it would be impossible for them to understand. My grandmother went from being a strong, independent woman nearly larger than life; to being a clingy, fearful, frail little old lady in a matter of two years. Alzheimers is a very ugly disease that takes a person away from themselves and their family small bit by small bit. Each and every day (sometimes every hour) is a new experience with new triumphs and challenges. My grandmother routinely surpises me. She doesn't know her own age or birthday, but about a month ago she told me she couldn't believe that I was 41. Guess what, I am 41! I was shocked. Alzheimers is a roller coaster of symptoms and emotions, seek all of the information and support that you can get!

Sherry

January 30, 2009 2:52 p.m.

My husband has Fahr's syndrome (degenerative genetic disease that causes calcification of basal ganglia &amp; cerebral cortex), and much like AZ inolves dementia and related symtoms. We waited one year in horrible panic while a neurologist would not diagnose because it is rare...even though CT &amp; MRI suggested Fahr's. What a relief when we got the word from a specialist who took on the case. Can't tell the medical profession enough about finding out and telling us, rather than letting it slide...it was horrible to sit there in ignorance and helplessness...like a victim. Knowledge helps one face and cope, communicate and empathize. I know this for both myself, the caregiver who felt impotent to help us understand; and my husband, who felt confused and misunderstood, and under a death sentence without knowing the crime. PLEASE TELL.

Diane C

January 20, 2009 4:30 p.m.

I lost my husband of 56 years to AD this past July. Our MD told both of us that he had AD. My husband was so relieved that there was a name for something that was causing him so much distress. He was a retired Colonel but somewhat medically unsophisticated. I don't think he realized what he was being told. This was 6 years before his death. Whenever we would be with friends or children he would always say &quot;Tell them what I have.&quot; He couldn't remember the word but he found comfort that he had a disease and he wasn't just losing his mind. This is just my experience and I feel that each person is different. We all just pray that we do the right thing for our loved one.

Jackie Kellly

January 15, 2009 10:07 a.m.

My mother-in-law is showing signs of Alzheimer's or dementia. She cannot remember recent events, often tells the same stories over and over about something that happened fifty years ago as if it were last week, tells complete strangers inappropriate things, misplaces things, is argumentative, has extreme mood swings. My husband and I fear that she is incapable of caring for herself as she either won't take her meds unless we give them to her or she wants to take all of them at once. She sits in the dark with no lights or TV on and often refuses company. We are worried and she claims that nothing is wrong and we mistreat her. Is there anything we can do? She doesn't think anything is wrong- we are the &quot;crazy ones&quot; and she won't talk to her doctor about it.

Mary

December 13, 2008 7:28 p.m.

In the beginning, when I first suspected that my Mother had a problem, I tried to discussed it with her, and had no success. Finally, I took her for all the tests and ultimately, she was diagnosed with Alzheimer's. It was only then, and on the specialist's direction, that we told her she had the disease. It devastated her...and I agree with Barb and Sophia, in the respect that this disease (initially) affects the short term memory. After repeated (and inexperienced) attempts at helping her &quot;understand&quot; her condition, I now,(being more knowledgable) never mention the word alzheimer's to my Mum anymore, as she has no idea or recollection that she was diagnosed with the disease in the first place. Whether it's the memory, or the the denial, it's not fair nor humane to make Mum constantly accept or remember that she has this affliction, over and over again. Reminding them is forcing them to &quot;re-live&quot; the diagnosis. Mum knows she has memory issues, and I acknowledge her concerns by suggesting solutions such as writing lists, reminders and post-it notes. Keeping her active and involved in daily ways to maintain the memory she has, is much more productive than a daily reminder that she has an incurable disease. :)

Alison

November 24, 2008 8:13 p.m.

I have not told my husband that he suffers from Alzheimer's disease exactly.... but he knows he does not remember a lot of things. He is 81 and he has the symptoms like incontinence as well as he has great difficuly walking even with a cane . He is also hard of hearing. He does not drive anymore... I have to repeat a lot but he is very mild and very loving as well as appreciative for what I do for him.. He is on medications for it like Aricept and Ebixa and it seems to prolong the effects but still he is not the same man he was before...he has no interest in anything and likes to sleep in a lot.
he does not go for walks anymore because he can hardly walk without getting tired and dizzy...so he is gaining weight. Would anybody have suggestions for me to make him do things to keep his brain busy? He reads the newspaper but never finishes a book. he keeps reading it over and he was an avid reader. This is very hard on me. Thank you for any suggestions..to make it easier for me.

Claire

October 30, 2008 2:26 p.m.

I have have Alzheimer&quot;s. At first I denied it to my self and to my dear dear wife. I had a secondond opinion. Yes I have it, but I prefer to say that I &quot;have a mind boggling problem&quot;, and that is that. ALSO, with this knowledge, I gave my car key's to my wife. At first she qestioned me about this. Now she UNDERSTAND'S my thought's. I am even off the auto insurance. I told my friends,of this problem I have, now I don't see surprise look's if I should make a blurb. Lou

Lou

October 30, 2008 12:46 a.m.

I would suggest to physicians and caretakers that prior to accepting dementia as a final diagnosis, that a neurologist be consulted to deteine if the patient has hydrocephalus. This is a condition which has three major symptoms: dmentia like symptoms; difficulty walking and manintaining balance; problems with unrination incontinence.
Shunt surgery in many cases solves the problem and the patient returns to a pre-diagnosis state of clarity, focus, and good ambulation. Shunt surgery has saved many people from an inappropriate confinement to a nursing home with the incorrect diagnosis of dementia.
Caregivers need to be advocates for the people under their care. Doctors need to be vigalent to be sure hydrocephalus is considered as a first diagnosis and then ruled out of consideration by further testing. But if the conditions of hydrocephalus are found, then the doctor should take appropriate action.
No one knows how many people are incorrectly diagnosed with dementia who really suffer from hydrocephalus.
More information on this condition needs to be made available to the general public.
Thank you.

Michael

October 29, 2008 2:21 p.m.

A person with Alzheimers has problems with short term memory. If you tell them they have Alzheimers they will forget it. If you really want them to know they have the disease, then you have to continually tell them. I think that is cruel, since they will have to relieve the pain each time you tell them.

Barb

October 29, 2008 9:04 a.m.

The point is to tell the patient at the beginning stage when first diagnosed, while they are still mentally competent. Hopefully a patient is diagnosed early enough to be able to understand what's happening to them. This gives them the chance to direct their future care, get legal things in order and participate while they can. As the disease progresses and if they become agitated, then there is no sense in continually telling them they have Alzheimer's. At that point it serves no purpose as they don't understand. It's important to deal with it at the beginning when they can make decisions for themselves. So think about what you would want for yourself. Would you want to be told? Let your family know your wishes.

sophia

October 28, 2008 6:51 p.m.

We informed my mother of her Alzheimer's diagnosis when she was first diagnosed.
The problem occured on several future doctors appointment when something would be mentioned about her Alzheimer's and it was like she was being told for the first time, because she had forgotten.
She lived through that horror several times before we stopped using the term Alzheimer's

Gail

October 27, 2008 11:25 p.m.

Yes, I feel a person should be infomed that they have Alzheimers. They may go into denial at first but as they start to accept the disease they can plan for the future. The best thing a person with any terminal illness can do for their loved ones is to leave detailed instructions for their wishes in the end stage of the disease. When a person has a chance to write letters, say things that otherwise might go unsaid and to live a little fuller it somehow feels complete to their loved ones. I've been my Mother's caregiver for years now and because we didn't plan sooner I have to make many decisions based on what &quot; I think&quot; Mother would want and also their are so many legal issues to contend with. Long term care can sometimes mean giving up everything your parent has worked so hard for all their life. If you don't tell your loved one they have a terminal illness like Alzheimers then you loose out on a few years of &quot;look back time&quot; when it comes to considering a nursing facility. They take all your assets if their in the patients name or they have to be in someone else for a period of years.The sooner you can plan the better for everyone.You can focus on the quality of life instead of the quanity.

Mae

October 17, 2008 4:46 p.m.

I do not think the patient should be told. I belong to a support group for caregivers, and 2 of the 3 people who told their spouses, regretted it, since it caused much sadness and depression and weeping, for long periods of time. The 3rd caregivers' husband had some sadness in the beginning, but of course, that passed as his illness advanced. I do not know of any others of the 25 or so people in the support group who told their loved ones. My husband battled Alzheimer's for 14 years and I feel that he would have given up much sooner had he known and understood the reason for his problems.

barbara

October 14, 2008 9:41 p.m.

My husband was in complete denial that anything was wrong. When the Dr. told him that the MRI and all tests showed he had Alzheimer's, and that he had to quit driving immediately, I thought he would fight it, but he took it calmly and even accepted the fact that he couldn't drive. It was a relief to me. Later he even told people that he had Alzheimer's Disease.

Carol Chambard

October 14, 2008 5:46 p.m.

When we thought that my Dad might have Alzheimers disease, we decided that we should tell him. That is tell him what we thought. He told us that he did not have this diseas, but he accepted to go for some tests. Well he was right. But now he pays more attention when we talk to him, when we ask him things. He does make lists and he does ask us to repeat when he is not sure what we are asking of him. He also accepts to have one of his childre ( he has a few, lucky him)when he goes to any doctore's appointment.

CAROLE

October 13, 2008 4:52 p.m.

My mother does not like to amit she is wrong to us children , if we try to bring up the subject she gets very rule and upset. the dr felt it was better not to tell her to help conrol her other health problems , she seems to think she is crazy and we feel the same . Some days are unbearable where as other days are the complete opposite. she 's 93 and can be so sweet at times . but i must say she has her days,

becky

October 12, 2008 12:28 p.m.

my mom has livd with me for 4 years,she has dementia.the first year she was here
she would ask me what was wrong with her and why she could not live in her own home.i used to explain dementia to her but,it only upset her,i do not use that word anymore and when she askes i simply tell her she is getting older and has some memory issues. that seems to satisfie
her and in seconds she forgets what we were even talking about.i love her dearly,and yes this is such a cruel deasease for her and me.i take one day at a time with her. it can be very lonely
and confusing.but i always have a smile on for her and lots of hugs.

shari

October 8, 2008 11:02 a.m.

My mom has been in denial for years about her symptoms, and would fly into rages over the least little thing, let alone being told she has memory problems or Alz. The doctor (a specialist in geriatric care) was never any help with all of the problems mom or the family faced, especially since Mom was an expert at fooling him by putting on her sweetest self when she was in his office. Meanwhile, at home, mom would stay in the same clothes for days, wet her pants and fly into a rage of embarrassment if this was pointed out to her, soil all the furniture and deny her house smells bad, etc. she should have more care at this stage but is not agreeable to any strangers being in her life in any way

Sister

October 8, 2008 8:33 a.m.

I think someone with Alzheimers disease has a right to know their diagnosis, just as they would with any other fatal disease. My husband and I shared his disease for 11 years. I didn't tell him immediately to give myself time to accept it, but we always were honest with each other and shared everything in our 42 year marriage.When I told him in early disease we clung to each other and wept, but it helped to bring us closer together so at the end he could say &quot;I love you&quot;. My memoir, &quot;Everything Will Be Alright&quot; explains how I was able to improve the quality of his life throughout the Alzheimer's years.It is a love story to remember.
Proceeds from my book are donated to Alzheimer's research
Keeping secrets damages relationships, especially when it is a spouse.

glory read

October 7, 2008 9:15 p.m.

I have an elderly father in law. My husband and I take care of him and keep him on even keel. He is an A-1 hypochondriac. He does have symptoms of Alzheimer's, however , we tell him he has memory issues and at 87 it is OK. He knows that we love him and will always care lovingly for him. In our personal case we feel it is the kinder not easier route of care for him. Our past experience tells us that with him if he has a diagnosis he immediately develops all symptoms of it no matter what. With out a clear diagnosis he recovers from anything within a week. What other approach can our experience tell us to do with him?

Mahega

October 7, 2008 8:10 p.m.

I had 2 grandparents who suffered from Alzheimers. They were both aware of their diagnosis since at the time of diagnosis, they were still mentally sound and their doctors informed them of their condition. I know there are a lot of people who are able to get information about another person's health and they then decide first, if they will even let the patient know, and second, how much of the information they decide to relay to the patient. I think that is wrong. If a person is still mentally sound, then they are the only ones a doctor or medical professional should be talking to about any diagnosis, testing, treatment, etc. Everyone has the right to know their own medical condition and to be able to make their own decisions about their health and their life. Alzheimer's steals a person's life and identity. It is vital for that person to know what is wrong with them so they can prepare for their future, get their financial and personal affairs in order and live life the way they want to before this devastating disease takes control of them and steals their life. What if they have children or grandchildren who live in another state? It would so important for them to be able to visit their oved ones and spend time with family and friends while they still can. I don't think someone's medical condition should be concealed from them by any doctor or family member, unless that person is already incompetent.

Maggie

October 7, 2008 5:29 p.m.

I DEFINITELY would want my doctor to tell me if he suspected I was starting or already have started to have it. That's what I am paying him for - his knowledge!
If you knew early enough you would have time to do the legal things necessary for your medical care and financial care and make a will while still considered to have the ability to do so.
If their are medicals trials available you could decide if you want to try it instead of just becoming a vegetable and wonder each day it progressed -WHAT'S WRONG WITH ME?
My sister was told she had cancer and died even though she tried all treatments possible to satisfy her family. She had the rest of her life planned, her funeral taken care of, her obituary written and wrote letters to her children to be opened after her death. She had time to call and talk to long lost family and friends, to tell some she forgave them.
Who wouldn't want a chance to do all that while still able?
Instead of waiting until your death or loss of mental ability you could pass heirlooms to loved ones and see their reaction.
If the doctor fells you aren't stable enough to hear it he SHOULD call a family member and ask them to bring you back with them so you can help him explain. DO NOT use the patient confidentiality and just ignore it. HELP THE PEOPLE WHO TRUST YOU!!

Ruth Ritchie

October 7, 2008 3:29 p.m.

I think it would totally depend upon the character of the person with Alz. Some people would handle it, others would be destroyed by it. It would probably be a good thing if their Dr. or a Dr. whom they trust does it. Sounds sort of chicken i know, but there is a certain amount of blame that goes with the telling. I know. Every rotten landmark of the disease had to be approached by someone responsible, it usually falls to spouse or 1 child. The you can't drive anymore, (which is really a rough one)the you can't manage your own money until you can't be left alone and then on and on.
One big thing to do get a Power of Attorney for Business and Healthcare and be sure it includes the disposition of the body in the allowed powers.
When it becomes time to have to use it, it is too late to get it. Petitioning the court for Conservatorship is nasty. Deepest to anyone who has to do it.

tortie queen

October 7, 2008 2:21 p.m.

I have a son with neurofibronatosis, scoliosis, seizures, and a mother with alzheimers. By being open about every phase of my son's health, we have worked closely together to give him a positive life. When Mom was diagnosed with Alzheimers I took the same reasoning applied to him over the years and immediately told her what she had, what the prognosis could be and where we were going. My mother found a certain degree of confidence in that based on the success I had with my son. She turned herself over to the doctors and my best judgement. While she remembers little of that (and lots of the past) she tells everyone when I come on the scene &quot;She's a bossy ol' bitty, but she knows what she is doing.&quot; If you have established a relationship like that with your loved one, you can tell them and take charge.

Ethel

October 7, 2008 8:02 a.m.

This is a tough question. I've told my mother that she has 'memory issues' but still the deception is disconcerting to me. Dementia seems to involve a lot of deception; we recently moved my mom to a memory care facility and were told not to tell her about it until it happened (she is midstage). This is very troubling for me as I have always shared everything with my mom. At this point, I'm not sure she would understand what dementia is, while she does seem to understand memory loss.

Robyn

October 6, 2008 9:16 a.m.

Well stated Sophia!

Angela Lunde

October 6, 2008 8:53 a.m.

Would you want to be told? Would you want to direct your own care while you are able and to have a plan in place for when you're not? It's important to be truthful to be able to plan for what's to come. It's especially important for the person to be able to get all the legal documents in order while he is still competent. No one knows how fast the disease will progress, but it's certain that it will. A Health Care Directive is imperative as is Power of Attorney. Alzheimers care can bankrupt you, financilly and emotionally. You need to be prepared. Find support groups, check out adult day care, have family discussions. Do these things while you can still understand what's going on.

sophia

October 4, 2008 9:42 p.m.

A diagnosis of Alzheimer's is a death sentence! For some people, that will rip out their spirit and I believe that one's spirit plays a MAJOR role in one's health. (How often have you heard stories of a patient's death quickly following the doctor's bleak prognosis?) I think it's important to know your loved one well, and for the carer to make the determination of whether - or how - to reveal this diagnosis. Of course, when the day comes that there is a CURE for Alzheimer's, then the patient can be enjoined to reach for the cure.

MountainClimber

October 4, 2008 7:44 a.m.

I think it is extremely important that you tell those with a dementia diagnosis about their disease.
You then can plan a strategy, with their doctor, of the best ways to slow down the progress of this condition and enjoy their remaining time.
Eating right, not smoking and keeping mentally and physically active go along way in keeping dementia from progressing
by Susan Berg author of
Adorable Photographs of Our Baby-Meaningful Mind Stimulating Activities and More for the Memory Challenged, Their Loved Ones and Involved Professionals a book for those with dementia and an excellent resource for caregivers and healthcare professionals.
http://www.alzheimersideas.com
http://blog.seattlepi.nwsource.com/dementiacare/
http://dementiaviews.blogspot.com
http://activitiesdirector.blogspot.com
http://dementiatips.blogspot.com
http://dementia.today.com

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